Support for Autism Parents Everywhere

26 Things I Want to Say to Autism Parents

This is the 26th issue of the I Am An Autism Parent newsletter. Here we are at the half-year mark, and I wanted to try something a little different.

So here are 26 things I wish someone had told me in the early weeks and years of my son’s autism diagnosis. (These aren’t in any particular order.)

Acceptance is hope. Some say that accepting your child’s autism diagnosis is the same as giving up on helping them. Nonsense. Acceptance is not only about accepting your child as a person of infinite worth, it’s also about accepting where things are right now so you can move forward. Always with hope for a bright future.

It’s not your fault. It seems like there are a thousand studies and stories to make you think it is – and another every day to add to it – but it’s not your fault. As a matter of fact, assigning fault isn’t even the point. Your child is who they are. See point #1, and then try to move past fault.

Presume competence. Don’t let anyone say your child isn’t capable of doing something. It may take a while or a long time, but keep trying, keep presuming they can, and your child will always surprise you. Surround your child with people who also presume their competence.

It’s OK to ask for help. Ask other parents at school, get on Facebook, do whatever works for you, but reach out to other parents for help, guidance, wisdom, and support. We need each other in order to be able to do the right things for our kids and ourselves.

Grab sleep any way you can. Give up whatever you have to. You cannot sustain your ability to parent without it. There’s no contest to be won on how little sleep you can get by with. Get every bit you can.

You are in this for the long haul. You will be spending a lot of time over the coming years helping your child find ways to overcome all their challenges. You need to pace yourself. Don’t be in a rush. Just be deliberate and make sound decisions based on what you know. This also is a huge reason for point #5.

Practice random acts of kindness toward other autism parents. We each need all the support from each other that we can get. Just little, simple acts of kindness mean the world. That and they will make you feel better, too. One of the best ways to improve the struggles in your day is to help another with theirs.

Say ‘no’ to as many obligations and requests for your time as you possibly can. You need all the time you can get to help your child, save valuable energy, and meet the obligations of your own life, sleep, and so on. We often feel guilty for saying no. Don’t. Your time is yours. You can spend it however you want. Spend it on what matters, not on what other people think matters.

Build routines. Autistic children almost always thrive on structure, and some absolutely depend on it. The more predictable and expected the routines are, the more comfortable they are with life. And they help you, too. The routines help us take some stress out of our own lives.

If you worry you’re a bad parent, you’re not. If your kid gets through the evening with an iPad and tortilla chips and nothing else, you’re not a horrible parent. We’ve all had these days. Some days you just need to get through. Don’t judge yourself for how you do that.

We are all afraid. You’re afraid. I’m afraid. That parent over there is afraid. The parents you see at your child’s therapy office are afraid. The parent you think has all their crap together is afraid. Acknowledge this. Practice compassion with these fears, to yourself and others. Choose to love as much as you can over being afraid.

Get by yourself for a few minutes. Take a few minutes each day, get by yourself, close your eyes, and breathe slowly and deeply. Do it in the bathroom if you have to. This simple practice each day will make an enormous difference in your sanity.

Don’t compare your child to anyone else’s. Your child is on their own time table. Your child will develop at their own pace. So will everyone else’s. Comparing your child’s development to another will drive you crazy. Don’t do it. Let their stories be written in their own way.

Get on every list you can find that offers you help, respite, a day out, whatever. Get on your state’s wait list for Medicaid waivers or whatever your state calls it. Get on every respite and services list you think might help. The demand for all these things can be high, so get on the lists now.

Get out in public and do things. Don’t hide at home. I know it’s hard to take your child out in public for fear of them melting down, trying to run away, or any of a number of challenges that happen when you go outside the relative predictability of your own home. Do it anyway. Start small and slow, but do it. They need to learn how to do it, and you need to learn how to help them and yourself overcome these challenges.

Celebrate every accomplishment, no matter how big or small. We may, for example, feel silly celebrating our child making a new consonant sound to our other friends, but this is a huge deal for many of our kids. You know how hard they and everyone have worked for that achievement. Celebrate everything.

You can do hard things. Something we all experience is looking ahead at the future and thinking, Holy crap how am I going to be able to do all this? But then you get started, and you begin to do these things. This is because you are an autism parent now, and you can do hard things because your child needs you. And you’re awesome.

Perfection is ridiculous and impossible. We seem to think we need to be perfect parents, or that everyone else thinks we do. We see all these other parents and think many of them have all their crap together. It’s an illusion. It’s a destructive myth. Don’t buy into it. We are human; we were never meant to be perfect.

You are liberated from ‘normal’, too. As an autism parent, you are even set free from ‘normal’, whatever that means to begin with. We do things our way and perhaps live a life in another parallel dimension from most other parents. This feels daunting at first, but it actually can be fun. You get to be around some amazing children and families who share the same challenges as you.

Ask people who respect you to write a paragraph to you about how awesome they think you are. This may sound corny, but do it anyway. Keep these paragraphs with you and look at them when you feel like you are in your most difficult hour. These are your affirmations from the people who care about you, love you, and want you to succeed.

Surround yourself with people who want you to succeed. Speaking of people who respect you, you want to create a community of support with people who want your child and you to succeed. If someone is a drain on you, doesn’t have your interests in mind, or can’t get with the program of feeling positive about your child, you have every right to boot them out of your life. Find people who lift you up and cheer for you.

You don’t have to be ready. You will say to yourself, “I don’t think I can do this.” You’re overwhelmed. You feel like you’re not ready for all this. The enormity of it is beyond all your comprehension. But here’s the deal. Unless you are some sort of other-worldly being, you’re not ready. None of us are. But we have each other, and as autism parents, you are never alone.

Do the next right thing. This was a great piece of advice someone once gave to me for when life feels out of control. What is the next right thing you can do? Then go do that. And do it again and again until things are OK.

You already are a hero. You and I are reasonably typical people now facing some extraordinary challenges, and our children face even greater challenges still. Believe that you are a hero. You don’t have to be a hero to everybody. You already are the hero to your wonderful child.

Choose love over fear. We love our children more than anything, including ourselves. Let’s work on finding ways to let love expand so we can best take care of our children, our families, ourselves, and each other. Let us choose and re-choose love over fear.

You are going to be OK. However, let’s be honest. Your OK is different now. You’re not going to be OK all day, every day. You may spend a lot of time not feeling very OK at all. What your new OK is will be something you discover along the way. What you are seeking is a completely different kind of peacefulness than you’ve ever sought in your life.

Ideally, this is a peacefulness where you can face the strongest winds of chaos, staying rooted in the ground while able to bend, but not break. Many days it’s the feeling at the end of the day that you survived and that tomorrow will hopefully be better. Other days it’s the satisfaction that you are breathing and you managed to get your pants on correctly.

If nothing else, draw peace from the fact that we are all in this together. You are not alone. And because of that, you will be OK.

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